To:
Directors and Scientific Advisory Board of Hemispherx

Tell Ampligen Maker To Put ME Patients First

As patients with ME (aka ME/CFS), we demand that Hemispherx, the makers of Ampligen, put patients first and restore the Ampligen clinical trial before serious harm occurs to trial participants and to prospects for FDA approval of the first ME medication.

We are outraged at the 167% increase in price for Ampligen in the clinical trial. Almost tripling the cost will cause many patients to stop the medicine with serious health consequences and shows how little you understand ME’s health and financial devastation.

We are outraged that Hemipherx is ending the compassionate care program which supports a very small number of patients with no financial resources. All drug companies should commit to compassionate care.

We are outraged at changes that would reduce the number of ME patients who can access the Ampligen trial. Patients need larger clinical trials and more opportunity to try Ampligen because we have no treatments. Restricting access to only current full-time participants removes any hope for most of us to try the medicine.

We wish every day for the first ME medicine to be approved by the FDA, so we can have 1 treatment to try and so pharmaceutical companies will invest in our disease. We have watched Ampligen patients advocate forcefully for its approval at the FDA. Many of us have signed petitions and letters, and we’ve testified at hearings, stakeholder meetings and to our elected officials that we need FDA to approve the first medicine for ME.

Hemispherx’s changes to the program are predatory and cruel, given our desperate need for approved treatments. Moreover, we believe your actions will damage prospects for FDA approval, and that will harm all of us. Ampligen, and therefore Hemispherx, cannot succeed without its patient base and advocacy. You must always put ME patients first.

We therefore urge the Board of Directors and Scientific Advisory Board of Hemispherx to: restore the prior price of Ampligen, retain the small, but critical compassionate care patients, and rescind efforts to restrict participation on the basis of current dosing only.

Why is this important?

Patients in the Ampligen clinical trial are asking for help to protest changes that will force many to stop getting this medicine. Three changes made by the drug maker threaten this clinical trial: a 167% price increase, ending the compassionate care program, and restricting access to current full time enrollees only. These changes obviously affect those who are in the trial, but they also restrict future access by many patients. We also believe that they will harm prospects for FDA approval of this first ME medication. We do not believe FDA will approve Ampligen without being face-to-face with patients who demonstrate that the medicine works for them. There are no other clinical trials for ME, and no drugs in the FDA pipeline. We know approval of the first ME medication will lead to more clinical trials and investment by the larger pharmaceutical industry. Roughly half of the current Ampligen participants have sent personal letters to Hemispherx urging them to rescind these changes, and we ask you to join us in making sure Hemispherx puts ME patients first.

Category

Reasons for signing

I have been suffering from CFS for nearly 30 years. Something needs to be done to help all sufferers.

Kristie M.
2018-10-06 20:18:06 -0400

Like ThisFlag as InappropriatePermalink

I signed because I had hope knowing ME sufferers were benefiting from taking Ampligen. Then absolutely appalled and devastated by the news of the company's exorbitant price increase which spoke, no shouted only of corporate greed and of taking advantage of people in severe need. This is an all too common occurrence these days. It's very disheartening and left me without hope that maybe some day I too might have access to Ampligen.

Lisa H.
2018-05-04 02:42:43 -0400

Like ThisFlag as InappropriatePermalink

My daughter suffers from ME/CFS, she and millions of others need a chance at treatment.